CardioExchange, an NEJM practice community for medical professionals dedicated to improving cardiac patient care, was active from 2009 to 2015. CardioExchange fostered discussion between clinicians from across the globe.

May 7th, 2015

Big Data, Big Problems

As we are wrapping up CardioExchange, I wanted to ask our community members to think about a pressing issue facing us as health care providers, and health care consumers, over the next few years. When CardioExchange was founded six years ago, online communities were the “next big thing.” Today, wearable devices — commonly referred to as wearables — and biosensors hold that title. However, there is a complexity with wearables, particularly around ownership of data, that I feel has not been adequately addressed.

Wearables include devices such as fitness tracking bands and smart watches, which collect and analyze large amounts of physiological data from their users. These data may include heart rates, temperature, activity levels, and sleep patterns, among other measurements. In the future, measurements may expand to blood-sugar levels, blood-alcohol levels, and acid/base disturbances. Futurists propose even genetic and genomic analysis through wearables, although that is admittedly some way off.

In an era when we are redefining ownership of and access to data, it is important to define data ownership as it pertains to wearables. Currently, the data are collected by data brokers who can provide it to companies who pay for the information. The terms of service of wearables are complex and essentially non-negotiable, in particular at the time of the purchase of the device or download of the app. The device cannot be used without agreeing to the terms and conditions (“I agree”). As we have asked for more transparency from our pharmaceutical companies, our researchers, and our health care systems, it is time to ask for more transparency from the tech companies that have entered into the wearable market, collecting what in broad terms can be considered as health care data.

In terms of the data generated by wearables, who ultimately owns this information and who has the right to decide what is done with the information collected? Is it the consumer who paid for the device and wore it on their first 5k? Is it the company who invested time and capital into creating the device? Is it a third party that decides that they need the data to do market analysis? Or, finally, is it a researcher who gets a grant to analyze the Big Data created by these novel measuring devices?